Don't Got Much

It's a slow news day over here at adrenal central.

Weight loss seems to have stabilized, although we'll see since I'm still not eating normally.

Did a slow motion elliptical work out last night under the theory that my will is stronger than my body.

I am being punished today with active GI symptoms.

Toddler has the boogies of doom, so sleep has been scarce the last few nights. I like to think that's why I'm so tired.

I tried to get the hubby up to handle her, especially the night after I fell down the stairs, as I was pretty sore, but he just won't wake up. While I wish I could sleep like that, it's probably for the best that we aren't both dead to the world. Or else who would find the toddler's lovey at 2, 3, and 4am? Or clean her nose? And check her for fever?

We took her to breakfast with Santa and I took a million pictures. I am trying to get a good picture of her for Christmas, but, unfortunately, she's going through a phase where, if you tell her to smile, she scrunches up like Santa just launched hot wings and beer farts right in her face.

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My Thanksgiving

Saturday was my Thanksgiving. We had a great family day. Put up the tree. Did the Christmas lights. Hubby watched football. I read The Immortal Life of Henrietta Lacks in one sitting. I don't often get time to just read. When I'm adrenally whacked, I don't have the focus to read. When I'm healthy, I'm too busy to stop.

We rolled up brie and reduced sugar jam (black cherry) in ham. Wow, that was really good stuff. Roll your eyes back in your head good. (If you eat bread, a grilled cheese with this would have been orgasmic.)

You could say my appetite is back to normal. Food even tastes good again.

Despite the ankle and a developing cold, my energy was really good. Did not need to nap at all. Able to keep up with the day. Would have exercised except for, you know, the ankle.

Hubby is down for the count with the cold too. I have a light touch, he's hurting. I feel bad for him as I am really the last person to look to for sympathy.

So I think that means I have sympathy for him because of my lack of sympathy? Huh. Need to work on my sense of logic.

Still at 15mg. 10 in the am, 5 at noon. Seem to be okay for the day after that. I would skip the noon dose, but my body wilts. The fatigue sets in, my limbs get heavy and it's either bed or 5mg.

What's happening now is not what was happening before. If this is HPA axis suppression, it's a new version. One in which it feels like my body is not showing up for work.

I used to just take one am dose and, after an adjustment period, I would be fine (other than steroid withdrawal). That's a pretty big simplification of what I went through, but as bad as it was, I didn't feel like my battery died in the middle of the day. Like my body was just blank inside, not remembering what it was supposed to do or understanding what was missing.

I thought I was tired before? That energy was low? I had no idea. This is a new level of hot mess. There's no adjusting. My body is empty this time.

However, I am fully expecting my am cortisol to be fine and that I will be told to wean as of Monday. At which point I will pitch the idea of steroid resistance. As if anyone will listen.

Is there even a test for that?

I worry about taking steroids when I don't need them. I worry about not taking steroids if I do. I worry about missing something else.

Praying there's a clear signal one way or the other.

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Mixed Bag

Well, Monday was not better. It was worse. At one point I began to fear I was heading for real trouble. I must have done too much on Sunday? I just really felt the need to keep living my life and do things that nourish me as a person as opposed to always being benched by my health.

So I went out to lunch with a friend and caught up. It went pretty well. I felt like I was safe to drive, which is not always the case. I was able to keep up with the conversation even though I lost track of my point a lot.

I thought, 'Wow, I'm getting better.'

Then I had a terrible time getting up. Did not sleep well. Had some muscle cramping, which is really weird as I've not had intermittent steroid withdrawal before. If that's what this is.

Finally felt up to making cookies with the toddler. Filled the CD player with Christmas music and we baked (well she baked and alternately danced). There are now 3 dozen cookies in the freezer ready for the holidays in case I don't feel well enough to cook on the exact date.

After that, I was wiped, but I had promised myself I would make a crock pot meal, trying to stem the tide on the take out. My palate has changed enough with low carb that fast food actually tastes like junk to me now. I can not face anymore bunless burgers from various junk franchises. It tastes like crap. (Exception to the rule: I still like french fries.)

I started shaking a bit and getting some back and abdominal pain. Tired enough to struggle with all the various recipe steps. I did eat. but it didn't help. Felt like my bp was low, but I couldn't check it, and hesitated to add salt as feeling low is not always the same as being low. The remainder of the day was conducted from the couch.

On the upside, I was able to make myself eat all three meals, the first time since 11/2. The hubby said I was much more talkative than I've been, and put in topic requests for football and industrial strength leaf blowers.

Perhaps that was why everything he said just bounced off my ears the other day? Because those are not things that interest me. Nor are they anywhere near my area of expertise. If they are your forte, let me know, I'll hook you up with your new bff.

The mixed bag of symptoms means I won't updose yet. It has to be all adrenal all the time before I'll take steroids, but the uncertainty gnaws at me. I never know if I'm doing the right thing. I never know what will happen to my body or what medicine will do to me next.

I remind myself I have steroids. Heck, the ER even gave me a prescription for Zofran so I don't even have to vomit! I don't have to end up in the ER again, but I still freak when there's weirdness. The crisis shook me more than I realized.

Some anger showed up yesterday as well. Anger that this was all preventable. None of this had to happen to me. This suppression never had to be the most severe and dangerous one I've ever had (even if the taper was the gentlest).

What my body is doing is not outside the realm of medical literature. It's not like no one else ever had this problem. It's not like this has never happened to me before either.

All it would take to save me so much pain and grief is one well read physician. Just one.

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Status Check

Steroid withdrawal has diminished a bit. I could sleep last night and didn't have to fight spasms in my diaphragm to breathe.

The asthma is still pretty active. I still need the rescue inhaler at night and have been taking Pulmicort twice a day to try to beat it back into submission. Crossing fingers...I think I'm winning. (Update: Last night...first night without needing albuterol. Yes!)

I am eating! And yes! I'm excited about it! Not a lot, but at regular intervals. I have lost weight though and hit a number on the scale I haven't seen in a year (finally, a diet that works!).

My adrenal glands aren't burning anymore. So they've either given up and died or are feeling better.

Still weak. Weaker and fuzzier than I should be. I am trying to get by on the smallest possible dose, so perhaps am not taking enough.

Dosing is tough.

Endo told me to do 40mg and reduce by 5 every 2-3 days. They also told me I didn't need steroids and that this would not suppress the HPA axis (I am doubtful since my HPA axis is the gold medalist valedictorian champion etc... of suppression).

So the mixed messages from the endo and my fear of suppression mean I've been doing strange things with the dose. I feel guilty for taking them since I supposedly don't need them, so I try to minimize the dose.

Actually, I've been so loopy, I couldn't tell you how much I've taken at any one time other than to say, it was never 40mg and I only split dose a few times. Because splitting makes suppression easier.

Over the weekend I took 15mg of hydrocortisone, but I don't know where I came from. Maybe down from 30mg? Obviously, if I can't even keep track of my dose, I must be doing it wrong.

Today I will boost the dose back up to 30 and see what happens. If it helps, I am thinking of doing an alternate day high-low dose. Because I don't want to suppress.

Hedging my adrenal bets.

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They Know Jack About Adrenals

Sometimes people contact me looking for adrenal advice and I'm happy to share what little I know. One nugget I find myself passing on rather regularly is that your number one job is to stay out of the ER and away from doctors. It is not getting off the steroids. No, day-to-day the most important thing is to never need emergency care because you can not count on getting knowledgeable care.

So no tapering during high risk events like traveling or going to a party or right before your period. You taper when it is safe to taper, i.e. when you can stay home and do nothing. And you always carry steroids with you and don't hesitate to take them. Better to have too much for a day then be at the mercy of a hospital that may or may not know what to do with you.

They don't know jack about adrenals. The ignorance is pervasive.

Case in point, whenever the risk of stomach/bowel/esophageal puncture was brought up during endoscopy prep, I told them, "Make sure you give me steroids at that point."

To which the response has been confuzzled silence.

Yesterday, one doctor clearly had never heard the phrase HPA axis before. Didn't know, didn't care. In fact, they were kind of irritated because I was ruining their carefully prepared spiel on the risks of the procedure. Frankly, I wanted to smack them. It's fine not to know, but to not care that you don't know? Inexcusable.

Thank goodness for the very thorough anesthesiologist who printed out my history and read it. I'm not sure they knew what HPA axis meant, but the phrase 'adrenal insufficiency' in my diagnosis list made a huge difference.

Score for getting an endo on board in the same medical system where I seek most of my care.

Just like in real estate, location matters in medicine.

So that bought me an offer of steroids right there, right then. Which I refused. I had steroids at home. I wasn't in fear of an adrenal crisis (except for if they punctured my bowels in which case all bets would be off and gimme steroids stat) it's just that my system performance is not yet optimal. It was immensely reassuring though, to work with a physician who had some inkling of what this adrenal crapola was and how serious it could be.

I'm still shocked by how little doctors know about adrenals.

Today I took steroids in the hopes of minimizing the effects of yesterday. I don't want to take steroids at all, but I remember how long the recovery took after the last endoscopy. Besides the asthma has been at Defcon 5 since yesterday. I guess my lungs didn't like the anesthesia.

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A Bit of This, A Bit of That

1.The asthma has done a great job of making my lungs feel like they've been scrubbed on a cheese grater. With gusto. It is abating, bit by bit, this is not serious asthma, just painful asthma.

Further I am tired. Whether I am tired enough to need more steroids is still open to interpretation. Possibly I am in the denial stage of grief.

I am so close to breaking free, to have to significantly updose again, well, I worry it would reset the clock back to zero. Which would basically crush my soul.

2.I purposely used just my first initial on the ebook. M. Last Name. Now I'm getting what passes for fan mail amongst the business crowd and they all assume I'm a guy. The language used in the emails is different too, lots of guy oriented slang.

I wonder what would happen if they knew I had boobs and a vagina?

3.I think my gallbladder needs to be Raptured the hell out of my body. I am having problems. No stones, but I need a function scan to see if it's working (this was on the schedule but I got pregnant and it had to be scrapped). I suspect not and my body seems to be on the path to gallbladder implosion, the ante is ratcheting up.

The pain is daily, has been daily since Thanksgiving. Now heartburn is a problem despite avoiding food and taking extra Prilosec. Nor do I think that vomiting episode a few weeks ago was a bug, I think it was a GI mutiny.

This means at some point between now and the next decade, I will go see someone about it. I've been thinking to go to the same GI who treats my parent since this GERD GI crap is familial. There might be some benefit to working with someone who has seen how the genes play out.

Maybe I can avoid Barret's, although my parent has not been so lucky. (I know gallbladder is not specific to Barret's, but GI crap is all related, at least I think so for me.)

4. The toddler made a huge mess on the carpet with her jello. Smeared it right into the carpet she did. When I asked her to clean it up, she began to sob and meltdown.

I hadn't yelled at her. Had remained very calm in fact, but she was distraught.

Finally I said, "I still love you. You are still my special girl. Please clean up the mess."

Worked like a charm. It was really something. Gonna have to remember that one.

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Going Down

In basement.

Again.

Tornado spotted.

Too much tired.

With flank pain.

Lethargic.

Hard to move my arms.

Lay down every chance I get.

Still don't want to updose.

The HPA axis works.

Has to.

Don't want to undermine it now.

Damn it.

We'll see what happens.

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Today Went so Well, I Don't Want It to End

I had a lovely Sunday. Yes, it was Mother's Day* too, but mostly it was a lovely Sunday.

Because I finally felt half way decent. The muscle pain, which has been excruciating for the last few days, was gone. I had the energy I needed for the day (although I still napped against my will, laid down on the couch and then bam! o-u-t).

Plus it finally stopped raining. The sun came out and it was the most perfect Spring day so far this year.

And...the toddler slept until 9:30! It would have been a personal best except for the fact that she was up a 4am long enough for dread to brew in the pit of my stomach.

The relief I felt when she finally went back to sleep? Defies words. Please, please, please no more 4am wake-up calls.

We lazed in bed as a family until almost noon, watching my favorite morning news show CBS Sunday This Morning. I don't drink coffee, I watch morning news shows. It's my thing and I've mostly given it up to cartoons being TV free since becoming a parent.

Then we bought a bunch of garden stuff with carefully hoarded gift cards and completely redid our front landscaping. Well, the hubby did all the digging, I watched, coordinated, and did a little planting. The toddler pranced around in her bathing suit (which was the only thing I could convince her to wear) and watered plants like a drunken fairy, which is to say, she missed more plants than she hit.

No eating out since we still had about a billion tons of meat from the freezer the dog unplugged with his mighty butt. I now have 9 containers of roast beef and gravy in the freezer. Nine!!! Does anyone like roast beef that much?

Last, but not least, the hubby and I went for an evening walk together. Which we never get to do, but another babysitting score allowed us to stretch our legs after putting the toddler to bed.

It was just a lovely family day with decent adrenality (that is not a word, just roll with it). I told the hubby if things continue to go this well, I may not need to go to the lab for an am cortisol after all.


*Infertiles don't generally hype Mother's Day out of courtesy to those who are still waiting for their babies. For anyone trying to have a family and failing, Mother's Day is painful. I have my baby and the residual pain of infertility is still there.

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Action Adventure

The hubby and I scored some babysitting last night and went to see Fast Five, which is an action adventure movie where criminals are the good guys and drive fast cars.

After we left the theater, I told the hubby, "I feel like we should be aspiring to badassery. Like we're underliving."

"Yeah, me too."

"Hey, let's trick out the stalling minivan and do a bank heist."

"Can we have hydraulics too?"

"Definitely." We laughed, picturing a 'soccer mom' minivan humping the road.

"But do you have the energy to be a bad ass?" the hubs asked.

"Well, I'll probably need naps and right now my eyeball muscles are spasming so my aim will be off when I shoot at the cops."

"How will the napping work?"

"Once we break into the bank vault, I can sleep in there. I just need like an hour. We'll have to build some kind of distraction for the cops into the plan."

"Like what?"

"Ummm, aliens?"

"I don't know. Sounds like a lot of work. Maybe we're not up for badassery."

"Yeah, there's probably no adrenal insufficiency in badassery."

And then the minivan stalled, leaving us to stew for a good 10 minutes before it decided to work again. So much for our action adventure career.

No, we still don't know what's wrong with the van. We're working on finding a third mechanic, but our hopes are not high for a solution right now.

Maybe we should check its cortisol levels?

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Time for a Stick

My blood pressure is yo-yoing again.

Last night I had a low along with low blood sugar and diarrhea out of nowhere.

Right now the bp is super high, to where it hurts.

I've lost ground in terms of what I can do. Taking naps. Never feeling good for very long.

So the goal at this point is to figure out how I can get to the lab for an am cortisol blood draw. This takes some coordination since I don't want to drive without steroids in my system, but we'll figure it out.

I'm also regressing to 10mg of HC instead of 7.5mg.

PS: Got some great ebook news on my professional project. I sent review copies out to industry experts and top-tier industry bloggers. Got an email from a major expert today saying:

1.My book is awesome.
2.90% of the pitches they get suck, but mine was the exception
3.They are going to promote my book because they like it so much.

Which I think means I'll sell a whole 2 more copies or something.

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Nothing Bad Can Happen

I tapered.

Just 1/2 a pill.

No, I wasn't sure it was a good idea.

But it has been fine so far. Mostly. More on that in a moment.

I know some of you reading think this is too fast. You may end up being right. In terms of navigation, I'm working blind at this point. The signals my body broadcasts are mixed.

Yes, taper.

No, don't.

Maybe taper.

Taper tomorrow.

How about next week?

Here's the weirdness, the HPA axis is working but it also seems to struggle yet taking steroids isn't the answer. So???? Damned if I do, damned if I don't.

As an example, I got caught outside in a rainstorm and lightning hit very close by followed by a boom so loud it shook my chest. I began to run in the rain and my thoughts went something like this:

'Don't get scared. You can't handle being scared.'

And then my gut clenched.

'No, no, no. I said NO fear, dammit.'

But it was too late. The flank pain flared and my legs went into sad zombie shuffle formation as a wave of fatigue took out my knees.

I was fine up until then. No signs that the steroid dose had changed and then, lightning. I did recover after a few hours, so that was good. But certainly couldn't exercise after that or do anything terribly exciting. Too risky.

I can see if there is a pile-on of events that I may be in trouble. Like sleep deprivation followed by a dog needing surgery. You know, life.

So if I want to recover and be completely off steroids, nothing bad can happen from here on out. Nothing.

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Prednisone vs. Hydrocortisone for Adrenal Suppression: Pros, Cons, and Tips

One of the things that always puzzled me as I read through medical journals and textbooks was one would say to use Prednisone while another would say to use Hydrocortisone for adrenal suppression. These were always one-off sentences, almost throwaways and there was never any elaboration on the why of it. Nor a comparison/contrast of one steroid over the other.

I think I know the why part of it. Maybe.

It's a half life thing.

Prednisone sits and sits and sits in your system. If memory serves, the endo calculated a half life of slightly over 24 hours.

So if you take Prednisone every morning, there is never a time where you are without and this can work against HPA axis recovery.

Hydrocortisone, on the other hand, has a half life of 12ish hours. So you have at least half a day without any steroids in your system, time in which your brain is supposed to go 'oh sh*t, we need steroids STAT' and trigger natural steroid production. The 'oh sh*t' moments help the HPA axis recover functionality.

Now, when I was very first diagnosed as being suppressed, my am cortisol was 1.3 and Prednisone was used to treat it. I am torn on whether or not this was a good thing. At a level of 1, your body needs some help--a cortisol of 1 is not really compatible with life--and it's probably not a great idea to have a short half life steroid, at least not initially.

However, I don't think we needed to use Prednisone the entire year and I wonder how that prolonged the recovery. Also, I ended up with a pretty bad case of exogenous Cushings from the treatment, which tells me the docs weren't doing the greatest job of calculating my dose.

And this was with regular ACTH challenges. So they had data. I don't know what they were thinking. If I'm in the mood for masochism, I'll find some old pictures and show how bloated my moon face was back then. I even had a hump! I might have benefited from switching to Hydrocortisone during that episode.

Of course switching from Prednisone to Hydrocortisone this time was not easy either. It took me a very long time to adjust. So long the endo even said 'Wow, that's a long time' when I told him that I didn't adjust until February.

The pain. Oh God. The pain.

It was enough to make me fantasize about narcotics. Or drinking. Or narcotics and drinking together.

I don't drink.

I hate narcotics.

But I thought about them, very fondly, from December through February.

What I ended up doing was splitting the dose even though the endo told me not to. I came clean last week and told them I did it anyway in the hopes of helping other patients down the line. It made life livable and it did not impede recovery as far as I could tell. (And the endo doesn't seem to hate me for being such a rebel, I was clear the situation was intolerable without split dosing.)

Knowing that the goal was to be without steroids in my system as much as possible, I did the split doses all before noon. To be clear, I didn't change my total dose, just split it in two.

I took the first dose in the morning when I got up (usually between 7 and 9am) and then the second dose between 10 and 11am. This made it so that the excruciating muscle pain did not hit until after I had finished my evening job and put my toddler to bed.

At night, I used Tylenol pm or Advil pm or Benadryl to help me sleep through the pain.

Gradually, over time, I took the second dose earlier and earlier until it merged with my morning dose. That was the point where things seemed to improve. The pain faded. I began to exercise. Tapers started happening faster and faster.

Hydrocortisone has not caused severe Cushings like the Prednisone did, but we've also been working with much lower doses. My memory is a little foggy, but I seem to recall starting at 20mg of Prednisone last time and camping there for months, which is a lot.

Prednisone seems to be less painful, but also less effective than Hydrocortisone. Which is not ideal when you have the lazy stubborn azzhole HPA axis I do.

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Next Move

I'm really loopy right now. Just so you're warned. If you're wondering why I blog when I'm so impaired, it's because I'm no good for anything else.

I'm wiped because the endo appt stressed me out. So now the adrenal glands ache. For the first time in a long time. Which is disheartening.

My only frustration with my medical care is that it seems no one really understands the physiology.

According to the endo, I still just have steroid withdrawal preceded by suppression.

I don't agree. I think the suppression has been much more significant than doctors realize.

There is such a marked shift now that the HPA axis is waking up. My entire body has changed. It's not withdrawal, I can feel literally feel the difference.

The suppression was so poorly handled last year and the lack of any follow up testing once I weaned the first time, compounded things. There's a legacy here, a potent one and it just doesn't seem to factor in to my care.

However, ultimately, despite different points of view, things are progressing. The endo did the most intelligent thing yet in this debacle and that was switching me to Hydrocortisone with its shorter half life. Best move yet. Going to add that to my steroid playbook for future reference.

I requested a standing order for an am cortisol blood draw and, surprisingly, got it. If I tank again, the goal is to get the blood work done before starting steroids so the doctors have objective proof that can't be dismissed as easily as I have been to date.

The big question now is, will I be able to stay off steroids once I'm done weaning (which should be sometime in May if things continue to go well)? Exercise is a problem. Stressful situations are a problem. Just run-of-the-mill whitecoat anxiety can usurp the rest of my day. (How lame is that?)

The other big question, if I tank and the test comes back as low cortisol, what do I do? Is it time to travel and see doctors who do adrenals all day every day? Or do I chalk it up to the HPA axis still being in recovery mode?

It's hard to judge because, as I've mentioned before, all the literature says you updose for illness or surgery for up to a year after HPA axis suppression. The implication is just regular old stress or a hard work out should be okay. What does it mean that it's not okay for me?

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Weight of a Different Scale

Reasons TO taper before the end of March

1.Acne.
2.Mood.
3.Possible cause of stalled weight loss.
4.Haven't felt on the verge of passing out except for one time and it was not as strong as previous episodes.
5.Blood pressure seems to have stopped tanking.
6.No muscle pain or cramping.

Out of all of these 1&2 are pushing me the most to consider a taper. Granted, I have some serious personal stress going on, which may mean the mood (and acne!) has nothing to do with the steroids. But I like to think it's the steroids. Gives me hope of an easy solution.

Reasons NOT to taper before the end of March

1.Upcoming family attendance of children's concert.
2.Experiencing post exercise fatigue to the point of not being functional for more than 24 hours. (Guess where I spent the weekend? In bed.)
3.Inability to exercise.
4.Have had some flank pain here and there.
5.Skin pigment seems to be darkening.
6.It will hurt, don't feel ready for the pain.
7.Recent loss of appetite.

Most concerned about #1 which can be accommodated by updosing. 6 bothers me, I don't know if I can face the pain. Although it might not hurt, right?

7 could just be due to low carbing. Might not be adrenal at all. I can cut back on exercise. Not like I haven't totally deconditioned before and come back (Although every time there's an injury, which knock-on-wood I've avoided docs thus far. Massage therapy is a handy thing to know sometimes, especially if your piriformis is pythoning your sciatic nerve for a week.).

Even though it seems like I just got back on my feet and am living a halfway normal life, I am seriously considering dropping from 20 to 17.5 of hydrocortisone on an alternate day basis this week, just to see what shakes out.

Is it just me or does that look like a bigger drop than it is?

I don't know if I can do it.

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All the Boringness That's Fit to Blog

Things are steady state around here. The adrenals tried to do me in over the weekend, but the HPA axis was strong enough to power through (plus, there was ice cream). I had one moment where it felt like I was going to pass out, but then it faded away and all was fine.

That would not have happened a few months ago.

The only thing I'm wondering about is why is my skin 'tanning' again? What is up with that?

I have no idea what is going on with the blood pressure. I take the BP pill and don't worry about it. I don't think it's well controlled given that there's this one vessel in my sinuses (I think) that pounds so forcefully when I stand up or bend over that it squeaks. Doesn't happen all the time, but I find it unpleasant.

Who wants a head that could double as a squeak toy?

My dog that's who.

Not my goal in life, you know?

I'm still working out. Energy level is not tanking so badly now. I sometimes even think about doing an elliptical workout or going for a walk afterward, but I don't 'cause I'm lazy. We've (the hubby does these metabolic conditioning workouts with me) shaved 6 to 8 minutes off our time too. And I don't feel like I'm going to have a heart attack until around the ten minute mark, which is an improvement.

Although I did have to stop a bit as the asthma was becoming a problem, but we still finished faster than any previous workout so pffft asthma shmassma.

These workouts are not for the faint of heart.

I got a book on the whole concept called Cardio Strength Training written by some hot shot sport coach that maybe serious sports fans have heard of, but I have no idea who the hell he is. The guy talks about puking, about having to lay down at the end of the workouts, about how you're supposed to love-to-hate the workouts. I hope to not take it to that extreme, but I'm all for getting rid of fat and I'm willing to take a certain amount of pain.

Don't know if I've lost any weight as I'm not weighing myself until the carbs I ate due to the adrenal glands have been purged. Hubby has been calling me Pufferfish due to the carb bloat.

My stomach seems smaller and I have squatted my way into Venus dimples (the link says women with Venus Dimples have just 14 to 20% body fat which is in no way true for me!). My back is nowhere near as fat as my front, why can't the weight loss come from the flab fest in my gut first?

So unfair.

But some progress at least.

Food-wise, I'm eating eggs for breakfast and lunch with no snacks. Not in a disordered eating manner, more I'm just not interested in anything else and hardboiled eggs are an easy way to low carb. See also, cheap food in a bad economy.

I pop 'em on the stove, set the timer for 18 minutes and make the toddler's bfast or lunch. By the time her food is ready, my food is ready and I didn't have to stir it or even think about it.

This coincides with a general feeling of kitchen burnout. I've been cooking a lot lately and I'm just so over it at the moment.

That's it. Relatively drama free on the health front. Other stuff is not going so well but this blog is not about that.

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Caramel, Not Steroids, Epilogue to Snowgate 2011

The adrenals did kind of tank. Not only did we get stuck in the snow, which was stressful, the toddler later opened the door in the backseat while the car was moving. Even though I objectively knew she was strapped in and the door was not open open, my gut clenched sending out all sorts of fight-or-flight signals.

Which made my mid-back throb and I just...deflated like an old balloon half-way through our family grocery shopping trip.

But it wasn't as bad as it's been, we found the child lock button thingy on the door, finished our grocery shopping and I didn't have to up dose.

Although I should probably be careful so it doesn't get worse. I keep hoping if I can get through these stressors without having to updose that it will help reboot my HPA axis that much more.

So in the name of rebooting, I ate some ice cream. Ben & Jerry's Karamel Sutra (sp?).

It was totally medicinal.

You should try it sometime.

Post Script on the roads: The hubby initially made fun of me for getting stuck and calling the po-po, right up until he had to drive the side roads around here. The highways were clear for his work commute, but they didn't plow or salt the side streets and we got more than 12" in a 5 hour period.

We also got stuck, briefly, in the grocery store parking lot, which helped prove my point. Or rather, it made it so that if the hubby persisted in calling me a loser, then by getting stuck himself, he was just as much a loser.

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Snow, Salt, Sugar

Last night, when the weather people had orgasms on live TV about 10" of snow being a "conservative estimate" the hubby and I rolled our eyes.

The weather people were just excited to have something that let them be on camera for more than two seconds.

Or so we thought.

Today I was supposed to get my permanent crown. And have a play date and go out to dinner and go grocery shopping, but we canceled those non-essential events last night when all the schools closed.

Come hell or high snow though, I was going to the dentist. I wanted my damn tooth.

Famous last words.

I got out of the driveway okay. The snow was past the bumper, but I did a quick and dirty shovel job to chop it up enough that I cleared the drive way fine. Only once have I gotten stuck in the driveway and had to cancel something. I figured if I could get out of the driveway the rest would be easy peasy.

I'm sure that's what the police were thinking too when I called them.

The roads were not clear, but the snow was at least flattened down by all the traffic. However, it was very slick and one intersection was a sheet of ice.

We got stuck.

People were backing up into oncoming traffic to turn around. Cars whipped around those of us who were stuck, thinking what exactly? They were better drivers? The roads weren't that bad and we were all pussies? What?

Whatever their logic was, they were wrong and they learned how wrong very quickly as they lost control of their cars swerving in front of those of us who were spinning or wheels in place.

I didn't feel safe trying to get out because I couldn't control the direction the car swerved in as I gunned the motor. Plus, with everyone whizzing by so nonchalantly and then randomly losing control themselves, I was pretty sure someone was going to get hit.

This calls for the police, I thought. They should be monitoring this intersection and stop this free-for-all.

Also, I needed some help getting unstuck. Mind you, I wasn't stuck in snow. I was stuck on ice. Pure ice that covered the entire intersection. There was no traction.

22 plus years of driving and never been stuck like that. Never called the police either.

The police were unimpressed and barely contained their disgust with my motoring inadequacies. I was kind of disgusted with their lack of regard for public safety, but whatever.

I was on my own and had been so informed by the authorities.

Somehow I got moving. Inching forward with the engine revving at 5 and 6 rpms.

A sharp pain then started in my gut and my back began to ache.

Just what I needed! Adrenal weirdness that isn't supposed to happen to me, but happens anyways.

Then the police called me wondering where I was. Guess they hadn't meant what they said and sent a cruiser out after all. Someone needs to work on saying what they mean and doing what they say, which I pretty much told them.

I suspect I'm going to be on some kind of list of people who irritate the police and need lots of tickets after this.

We got home. Never made it to the dentist and I made some quick Nutjob cookies. (Nutjob because they are reduced sugar, gluten free all that health nut stuff.) Chocolate, sugar, salt, peanut butter.

Hopefully some rest, some sugar, a little salt will be enough to compensate for the stress.

Oh, and a nap. A nice long winter's nap. Wake me when it's Spring.

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Sifting Through My Medical Records:AM Cortisol of 6.1

First a note on Roger Ebert & the Newlyweds:

If you recall the post I did on the young couple in Arizona struggling to feed and house themselves while fighting terminal brain cancer, Roger Ebert has picked up the cause.

Read about it on Head Nurse's blog.

The couple's blog is here and this is where you can make donations.

And then say a prayer for the hundreds if not thousands or hundreds of thousands of people who don't have the insurance of a cause celebre.

***

I finally got my medical records from the last several tests I've had. Which is good considering the pulmnologist did not return my calls when I inquired as to the results of the CT scan.

Call me crazy, but I think that loving feeling is gone. On both sides.

The right lung nodule has not grown (yay!) nor is it gone (boo!), BUT it seems I have twins as there is now one on the left side that was never mentioned before (to my knowledge). Final 'impression': Stable punctate pulmonary nodules.

I don't understand all the terminology and I'm confused as to whether or not I have a new nodule. Was it there before or not? The radiologist's report will go out to relatives at the major University hospital for interpretation.

My am cortisol on the day I saw the current endo AFTER taking 10mg of prednisone?

6.1.

That is LOW people.

Keep in mind, this was not long after the most serious, scary crash I had where recovery was very very slow. I guess my gut instinct that I hadn't taken enough steroids to address the problem could have been right.

ACTH was less than 5, which is also low, but I suspect not unheard of if your HPA axis is suppressed.

So I guess the ACTH challenge shows some recovery????? The baseline was 13 which is more than double from where I was with the first am cortisol of 6. However, 13 is the cut off for additional testing of the adrenals so it's not exactly a promise that I'm out of the woods, although I am hopeful.

Ironically, the lab flagged my final ACTH challenge reading as high at 20.6. How funny! Especially considering that medical school texts advise that anything less than a 22 should be further investigated with an Insulin Tolerance Test.

The thing that aggravates me is I feel like the endo should have disclosed the initial low cortisol to me since that was the whole point of seeing them. I also would have been much more confident in their interpretation of the ACTH challenge if it had been framed in the context of ' you were at 6 when I first saw you, now you're at 13, this is progress.'

Don't get me wrong, I'm still going to push for another challenge if I struggle at sub-physiologic doses, but better communication would have been appreciated as well as been helpful.

Again, this is a hard, painful slog. I need to know I'm suffering for a good reason. Also, improving the context makes me less of a pain in the a$$ as a patient so it's really a win-win for everyone.

Is it really so hard? Did the endo even look back to see the initial results when discussing the ACTH challenge with me?

Aside from all the adrenal stuff, the Erythrocyte Sedimentation Rate was high. From my scant reading, I gather this is a non specific marker for inflammation that can be useful in determining a diagnostic direction. I don't really have any feelings about this one way or the other, although perhaps I really should see a rheumy.

Lastly, all the anemia related blood values are looking better. A lot of them are normal now and the few that are lagging behind are just shy of normal. This is a happy improvement.

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Back to Normal

Normalcy is the theme right now.

Done with the excesses of the holiday.

Back to low carbing.

Done with the excesses of prednisone.

Down to 5mg.

Waiting for 5mg to feel good so I can get back to exercise.

Done with the shortcomings of aberrant adrenals.

For the moment anyway.

Changing topics...

Got a call from a mom friend whose little one has asthma and is not getting relief with the current treatment plan.

Clarification, I've been getting phone calls from this mom friend for a while now.

Because it's not been going well for her little one for longer than it should.

So now they are on the merry chase for the right doctor, the right medication, the right tests.

Call me crazy, but I think medical 'Chinese fire drills' are really the biggest problem in health care. Both in terms of costs and quality of care. When a child with asthma has to see more than 4 doctors to get proper care which, in turn, also forces them to use Urgent Care or the ER as the stop gap, it's costing everyone a lot of money.

No one wins.

But that's just normal for our medical system.

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Vegging

I love the holidays and am thrilled that I feel good right now so I can enjoy the kickoff for Christmas.

The tree should be going up today.

We made another pumpkin pie because the hubby loves it. The toddler helped me make it saying, "Mommy, I'm making Christmas," as she stirred.

Everyone's still in their pajamas, the house smells like cinnamon, the Christmas music is jamming and the sun is shining.

It's gonna be a great day.

But not perfect.

I've had some resurgence of the back pain as I've tapered, but I'm trying not to give it too much attention. I did find some patient accounts of having pain that persisted past treatment so the idea that prednisone must fix everything 100% perfect or else it is not adrenal is not borne out.

I have had back pain with tapering before. Based on past experience, so long as the BP is okay, it should resolve as my body adjusts to the new dose.

However, just because I want to be sure to I'm okay today, I tapered to 6mg instead of 5mg, which I'll do tomorrow. The last thing I want is to be zonked from tapering.

And now I have to go. The family is demanding lunch.

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